Canadian women are often facing lengthy delays in getting reconstructive breast surgery after undergoing an earlier mastectomy.Marianne Helm
/ For the Calgary Herald

A single lump in her right breast was the loose thread that sent Belinda Stronach’s world unravelling.

“It kind of stops you in your tracks,” Stronach told Postmedia News in an exclusive interview. “You go about your daily life and you don’t wake up in the morning thinking, ‘Oh my goodness, I’m going to have breast cancer.’”

It was April 2007 when Stronach, former MP and CEO of auto parts giant Magna International, was diagnosed with the disease. A few months later, she underwent a mastectomy — the surgical removal of her breast — and reconstructive surgery in California. A surgeon in Los Angeles offered Stronach, at the time 41, an innovative, single-stage surgery that spared her nipple, an option she said was not available to her in Canada.

“It was quite different than any other option that I was given in Canada,” she said. “It meant I could have the reconstruction at the same time, and important to me was I could keep my nipple.”

Stronach is one of thousands of women diagnosed with breast cancer every year in Canada. Many have mastectomies as part of their treatment but, unlike Stronach, many never go on to benefit from reconstructive breast surgery.

In the course of this six-part series, women share their experiences of living with a mastectomy: a diminished sense of femininity, a loss of self-worth, frustration not knowing who to turn to for help, and scars that are a constant reminder. While not all mastectomy patients seek breast reconstruction, many are never informed of the procedure to begin with. Some live in regions where there is no immediate access to a plastic surgeon. Others are not told due to difficulties co-ordinating operating time between general surgeons who do mastectomies and plastic surgeons doing reconstruction.

For those aware of the option after undergoing mastectomies, their anguish is amplified by multi-year queues to get the surgery and the misconception that what they seek is purely cosmetic, akin to breast augmentation. Some complain of a lack of surgical options and a lack of plastic surgeons in Canada which cause them to opt for the procedure south of the border.

Their stories highlight a health-care system failing to provide a much-needed service for women in this country.

23,400 DIAGNOSED IN CANADA LAST YEAR

Breast cancer is the most common cancer affecting women in Canada.

One in nine women is expected to develop the disease during her lifetime, according to the Canadian Cancer Society. Last year, 23,400 women were diagnosed in Canada.

But fewer women are dying from the disease, likely due to increased screening and improvements in treatment. The current five-year survival rate in Canada is 88 per cent.

The mortality rate is the lowest it has been since 1950, according to the cancer society.

Lumpectomy and mastectomy, along with chemotherapy and radiation therapy, are standard treatments for breast cancer. A lumpectomy involves removing a portion of the breast, while a mastectomy removes the entire breast, and sometimes the lymph nodes and chest muscle.

For women who have mastectomies, and some who have lumpectomies depending on how much tissue is removed, there is the option of breast reconstruction. Reconstruction can be “immediate,” performed at the same time as the mastectomy, or “delayed,” performed in a separate surgery later.

The surgery can use implants, or can be autologous — using skin, fat and sometimes muscle from another part of the patient’s body, such as the abdomen, hips, buttocks or thighs — to reconstruct the breasts.

A combination of the two is a third option.

Yet despite more women surviving the disease, few ever undergo reconstruction. While not all want it, the surgery rates remain remarkably low despite the survivor group continuing to balloon.

In 2010-’11, a total of 24,735 women had mastectomies in Canada, according to the Canadian Institute for Health Information. Of those, just 945 women — about one in 26 — had immediate reconstruction. Only 1,719 women — about one in 15 — had delayed reconstruction.

When Stronach first discovered the lump in her right breast in early 2007, she was also dealing with changes in her professional life. In April of that year, Stronach — MP for the Toronto-area riding of Newmarket-Aurora — left politics to take on the role of executive vice-chair of Magna, the auto parts company founded by her father, Frank Stronach. Before her jaunt into politics in 2004, when she also ran for leadership of the federal Conservatives, Stronach was Magna’s CEO.

After getting a mammogram, Stronach said her fears were temporarily allayed when the scan turned up clear. But when the lump continued to grow, an ultrasound and biopsy revealed ductal carcinoma in situ (DCIS), the most common type of non-invasive breast cancer. Although it isn’t life-threatening, if left untreated DCIS can spread into surrounding tissue.

Reeling from the diagnosis, Stronach was grateful the cancer was not invasive.

“It was contained to the breast, so that to me was the positive to focus on at that point in time,” she said. “That was a big blessing.”

Stronach went into research mode, learning about all possible treatment options. On top of the shock of a diagnosis, choosing a treatment plan is overwhelming, she said.

“It’s a whole new subject matter you have to become an expert in,” said Stronach.

She decided on a lumpectomy, a surgical procedure in which only the tumour and some surrounding tissue is removed, conserving most of the breast. After a lumpectomy, a pathologist examines the mass to ensure there are no cancer cells in the tissue surrounding the tumour, called the margins. If there are, the patient must have more tissue removed until the margins are clear.

The cards were not in Stronach’s favour.

“They didn’t get clean margins on the lump,” she said.

Before deciding on her next course of treatment — either another lumpectomy along with radiation, or a mastectomy without radiation — Stronach sought opinions from several physicians. She eventually chose a mastectomy, of which the only comforting prospect was the option of immediate implant-based breast reconstruction.

A doctor would first remove the breast, including the nipple. Then, a plastic surgeon would place a tissue expander — a temporary implant that is slowly injected with saline solution over several months — to stretch the pectoral muscle and skin. The expander would later be removed and replaced with a permanent implant. After the reconstruction process, which takes several months, Stronach could have the pigment of her nipple replicated through medical tattooing.

Although confident in her decision to have a mastectomy, Stronach said she was hesitant about the idea of a tattooed nipple.

“I wasn’t really excited about that option,” she said. “I just felt that . . . why do you have to remove my nipple if the cancer isn’t in it?”

INVESTIGATING U.S. OPTIONS

She voiced her concerns to her radiation oncologist, who told her about a California plastic surgeon who could offer another option.

Dr. Randy Sherman, now vice-chair of surgery at Cedars Sinai Medical Center in Los Angeles, performs a single-stage procedure that combines a mastectomy and reconstruction and keeps the skin and nipples intact.

A relatively new procedure, medical experts don’t yet know the long-term safety of it. A major concern is that sparing the nipple has potential for the cancer to recur, although some short-term studies have showed promising results with no cancer recurrences within at least two years after surgery.

Stronach said she almost backed out of seeing Sherman. “You get a little exhausted with the process, and you think, is it really going to be that different, the answer?” she said.

The doctor made her a deal. They would test her nipple while she was in surgery, and if no DCIS cells were found, then they wouldn’t remove it.

Once she knew this option existed, Stronach said she raised the idea with her Canadian surgeon.

“He wouldn’t entertain the possibility of doing that,” she recalled. “He said ‘No, this is the way we do it here.’ ”

Stronach decided to have the surgery in California.

“It would have been a much greater challenge for me psychologically had I not had the reconstruction and had I not had a nipple-sparing mastectomy,” she said. “It’s a tough thing to deal with.”

Breasts are an important “part of being a woman and how you feel about yourself,” said Stronach, and being able to keep her nipple made the thought of losing her breast easier to process.

In a random twist of fate, while in Los Angeles recovering from the surgery, Stronach was approached by Toronto family physician Dr. Marla Shapiro, best known as a medical consultant for CTV News and a columnist for the Globe and Mail.

Shapiro, who had also fought breast cancer, wanted to establish Toronto as a centre of excellence in breast reconstruction. She asked Stronach, a known philanthropist, if she would help fund an academic chair in Canada, unaware that Stronach had just had a mastectomy.

“Marla had no idea,” said Stronach. “Life takes strange twists and turns sometimes.”

Through her own experience, Shapiro realized there was an acute lack of awareness among mastectomy patients about reconstruction, and she saw how long the wait times are.

She wanted to address both through an academic chair.

“The same way that we’ve closed the gender bias, for example, on heart health, we needed to close this,” Shapiro said. “Given that we are a centre of excellence in so many areas, I found it appalling that we weren’t in this area.”

When Shapiro first proposed the idea of an academic chair in breast reconstruction in 2006, fewer than 10 per cent of women who had mastectomies also had reconstruction. And the wait for surgery was “horrible.”

“Way too long!” she said. “And it’s inexcusable, because this is a funded procedure.”

While an academic chair wouldn’t directly address issues like wait times, Shapiro said she hoped raising awareness could impact government policy.

“I think the more awareness that there is, and the more of a need and the more there is demand, it’s a trickle-down effect,” she said. “This is a question of making this a priority, of making this is a voice that will be heard.”

Shapiro approached banks and charities to secure funding for the chair.

Although there was interest, Shapiro faced some criticism from people who assumed reconstruction is a cosmetic procedure.

“This is not about getting larger boobs,” she said. “This is about healing with dignity. It’s about encouraging women to understand what their options are.”

Although her breasts had never defined her, Shapiro said she couldn’t “help but be defined by the loss of them” when they were gone.

“You’ve lost your nipples and all you have is skin without any landmarks at all,” she said. “You can’t go to a gym and change publicly . . . because you’re like a train wreck that people can’t stop looking at.”

The option of reconstruction, she said, allowed her to be able to “get up and get dressed and be normal, and not have to be confronted by the mutilating scars on my body every day.”

BELINDA STRONACH CHAIR IN BREAST CANCER CREATED

After the two women talked in L.A., the Belinda Stronach Chair in Breast Cancer Reconstructive Surgery was created at Toronto General Hospital in November 2007.

Although it has been almost five years since the chair was announced, no one has been appointed to the position, which Shapiro described as “frustrating.”

“You can’t have a powerful chair with an empty chair,” she said.

The delay is due to funding, said Tennys Hanson, president and CEO of the Toronto General and Western Hospital Foundation. When the chair was announced, only half of the $2-million funding had been raised. In an e-mail, Hanson said that funding is expected to be in place by December 2012.

“As with most large gifts of this nature, the funds are paid over a period of time,” she said.

But the slow start doesn’t mean the money is sitting idle. As the endowment fund grows, the expendable portion is being used for breast reconstruction research and patient education, said Dr. Stefan Hofer, head of the Breast Restoration Program at Toronto’s University Health Network, which is overseeing how the money is allocated.

“So it’s been very helpful already,” said Hofer.

Some of the funding has gone toward tracking rates of breast reconstruction to determine demand for the surgery, said Hofer.

“We don’t know how many women actually want it,” he said. “Maybe only 30 per cent want it, and then we’re not doing so bad. It’s unclear.”

Still, Hofer said, the goal should be that “everybody who wants it should be able to get it.”

Funding has also gone toward establishing a microsurgery fellowship program to train more plastic surgeons, said Hofer.

Recruiting more surgeons could help reduce wait time but, so far, few Canadian plastic surgeons have applied, said Hofer.

Part of the problem, said Hofer, lies in the relatively poor compensation for microsurgery and breast reconstruction compared to cosmetic plastic surgery.

“It’s really hard to motivate people to do longer days and make less,” Hofer said, “but do more rewarding work, in my eyes.”

Although launching the chair is a step forward, both Stronach and Shapiro say women face far too many hurdles for reconstruction.

As a former politician, Stronach believes people need to bring more attention to the problem before government will address it.

“It will become a priority for politicians for when it matters to citizens,” said Stronach. “We have to demand this. The citizens have to be vocal about it.”

But without knowing the problem exists, Shapiro said nobody will raise their voices.

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